Factors associated with the quality of life of family carers of people with dementia: a systematic review

Introduction: Family carers of people with dementia are their most important support in practical, personal and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods: Searches on terms including ‘carers’, ‘dementia’, ‘family’ and ‘quality of life’ in research databases. Findings were synthesised inductively, grouping factors associated with carer QOL into themes. Results: 909 abstracts were identified. Following screening, lateral searches and quality appraisal, 41 studies (n=5,539) were included for synthesis. Ten themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional wellbeing; support received; carer independence; carer self-efficacy; and future. Discussion: The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it

The implementation of the serial trial intervention for pain and challenging behaviour in advanced dementia patients (STA OP!): a clustered randomized controlled trial

<p>Abstract</p> <p>Background</p> <p>Pain (physical discomfort) and challenging behaviour are highly prevalent in nursing home residents with dementia: at any given time 45-80% of nursing home residents are in pain and up to 80% have challenging behaviour. In the USA Christine Kovach developed the serial trial intervention (STI) and established that this protocol leads to less discomfort and fewer behavioural symptoms in moderate to severe dementia patients. The present study will provide insight into the effects of implementation of the Dutch version of the STI-protocol (STA OP!) in comparison with a control intervention, not only on behavioural symptoms, but also on pain, depression, and quality of life. This article outlines the study protocol.</p> <p>Methods/Design</p> <p>The study is a cluster randomized controlled trial in 168 older people (aged >65 years) with mild or moderate dementia living in nursing homes. The clusters, Dutch nursing homes, are randomly assigned to either the intervention condition (training and implementation of the STA OP!-protocol) or the control condition (general training focusing on challenging behaviour and pain, but without the step-wise approach). Measurements take place at baseline, after 3 months (end of the STA OP! training period) and after 6 months.</p> <p>Primary outcome measures are symptoms of challenging behaviour (measured with the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory-Nursing Home version (NPI-NH)), and pain (measure with the Dutch version of the Pain Assessment Checklist for Seniors (PACSLAC-D) and the Minimum Data Set of the Resident Assessment Instrument (MDS-RAI) pain scale). Secondary outcome measures include symptoms of depression (Cornell and MDS-RAI depression scale), Quality of Live (Qualidem), changes in prescriptions of analgesics and psychotropic drugs, and the use of non-pharmacological comfort interventions (e.g. snoezelen, reminiscence therapy).</p> <p>Discussion</p> <p>The transfer from the American design to the Dutch design involved several changes due to the different organisation of healthcare systems. Specific strengths and limitations of the study are discussed.</p> <p>Trial registration</p> <p>Netherlands Trial Register (NTR): <a href="http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1967">NTR1967</a></p

Kwaliteit van leven bij dementie : opvattingen onder mensen met dementie, hun zorgverleners en in de literatuur.

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Aortic valve and aortic arch pathology after coarctation repair

Objective: To investigate the incidence of clinical problems related to a bicuspid valve (aortic stenosis and regurgitation) and the incidence of ascending aorta and aortic arch pathology in combination with coarctation repair. Patients: 124 adult patients after surgical correction of aortic coarctation were studied. The incidence of aortic valve, ascending aorta, and aortic arch pathology was determined using echocardiography and magnetic resonance imaging. The median age at coarctation repair was 9 years and at last follow up 28 years. Results: Three patients died from aorta pathology. Aortic valve disease was found in 63% of the patients, requiring an intervention in 22%, at a median of 13 years after coarctation repair. Ascending aorta dilatation was observed in 28% and aortic arch abnormalities in 23%, among whom kinking of the aortic arch was found in 12%. Antihypertensive medication was used in 24%. In the patients with hypertension the age at operation and age at follow up were significantly higher (p = 0.0001 and p < 0.0001, respectively). Conclusion: In addition to the well known problems of hypertension and recoarctation, aortic valve and aortic arch pathology are commonly encountered in patients with previous coarctation repair. Aortic abnormalities may predispose to dilatation and dissection, thus necessitating careful lifelong attention in all patients with coarctation

Prediction of outcome after PEA in chronic thromboembolic pulmonary hypertension using indexed pulmonary artery diameter

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Prediction of hemodynamic improvement after pulmonary endarterectomy in chronic thromboembolic pulmonary hypertension using non-invasive imaging

Pulmonary endarterectomy (PEA) is the recommended treatment in chronic thromboembolic pulmonary hypertension (CTEPH). Prediction of outcome after PEA remains challenging. In search for pre-operative predictors we evaluated non-invasive parameters measured by chest CT-scan and echocardiography. Between May 2004 and January 2009, 52 consecutive patients with CTEPH who underwent PEA (59.6 % female, mean age 58.9 ± 13.4 years) were included. Prior to surgery, pulmonary artery (PA) diameter indices were calculated by chest CT scan and different echocardiographic measurements to evaluate pulmonary hypertension were obtained. Hemodynamic improvement after PEA was defined as a pulmonary vascular resistance (PVR) <500 dyn s cm(-5) and a mean pulmonary artery pressure <35 mmHg 3 days after PEA. Mortality was evaluated at day 30. Mean pulmonary artery pressure (PAP) at baseline was 40.1 ± 8.5 mmHg, with a PVR of 971 ± 420 dyn s cm(-5). Persistent pulmonary hypertension was observed in 15 patients (28.8 %). Gender, pre-operative mean PAP, PA diameter indices, and tricuspid annular plane systolic excursion were all predictors for hemodynamic improvement after PEA. The indexed PA diameter on CT was the only independent predictor for hemodynamic improvement: 19.4 ± 2.4 versus 22.9 ± 4.9 mm/m(2) in those without improvement (OR 0.76: 95 % CI 0.58-0.99, p = 0.04). All patients who died within 30 days (9.6 %) had persistent pulmonary hypertension, with a post-operative mean PAP of 51.6 ± 14.1 mmHg and PVR of 692 ± 216 dyn s cm(-5). The pre-operative PA diameter indexed for body surface area is the only independent predictor for hemodynamic improvement after PEA in CTEPH patients. In all patients who died within 30 days after PEA, persistent pulmonary hypertension was present.status: publishe

Kwaliteit van leven bij dementie Opvattingen onder mensen met dementie, hun zorgverleners en in de literatuur

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers ('sense of aesthetics', 'financial situation', 'being useful' and 'spirituality'), or not selected in the measuring instruments ('security and privacy', 'self-determination and freedom', 'being useful' and 'spirituality'). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N=374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains 'financial situation' and 'being useful'. Professionals offering daytime activities focused more than 24-hour care staff on 'attachment', 'enjoyment of activities', 'sense of aesthetics', and 'being useful'. This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533-558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer's Disease and Other Dementias 2007; 22: 176-183